holistic and person driven care - amazon s3...6/1/2015 3 pa autism census project: top 1o counties...

6/1/2015

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Holistic and Person‐Driven Care:Lessons Learned from the Autism Life Care Model

Pennsylvania Autism Training Conference / June 10, 2015

Michael J. Murray, MD / Amanda M. Pearl PhD / Andrea Layton, BCBA

Lessons Learned from the Autism Life Care Model| 2

Objectives

• After today’s presentation, participants should:

• Gain insight into critical functional domains when assessing individuals with complex needs

• Understand the benefit of case conceptualization for individuals with ASD

• Gain experience using multiple data sources to construct case conceptualizations using provided case materials

• Learn practical considerations for person driven, family centric care for individuals with ASD

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The Autism Life Care Model

The Trouble with Transition


PA autism census project: Adult Population projection

1,4076,113

17,075

36,261

58,746

73,592

0

20,000

40,000

60,000

80,000

2005 2011 2015 2020 2025 2030

Number of adults diagnosed with ASD in Pennsylvania

• Individual: $3.2

million/lifetime

• Societal: $126

billion/year

• Mortality: 2 – 6 times

higher

National Statistics:

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PA autism census project: top 1o counties with adults with aSD

Number of Adults with ASD Number of Adults with ASD per Capita

County Number County Number

1. Philadelphia 735 1.Venango 9.8

2. Allegheny 692 2. Mercer 9.6

3. Lancaster 252 3. Huntingdon 9.1

4. Montgomery 232 4. Warren 7.9

5. Delaware 227 5. McKean 7.8

6. Bucks 213 6. Snyder 7.6

7. Westmoreland 211 7. Erie 7.1

8. Erie 200 8. Clearfield 7.1

9. York 187 9. Cambria 7.0

10. Dauphin 185 10. Dauphin 6.9

PA Autism Census Project: top 10 counties with adults with ASD


ASERT Needs Assessment• Statewide needs

assessment conducted in 2010

• 3586 responses

• 56% were from families with adolescents or adults identified as having ASD, or from young adults identifying themselves as having ASD

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Significant factors of the poor outcomes for adults with ASDSocial Isolation

In a sample of 141 young adults with ASD in PA who answered a needs assessment survey on their own behalf:

• 69% were not employed

• 70% were not attending any type of post‐secondary education or training

• 80% were not participating in any volunteer work

• 77% did not participate in any type of community group or organization


Significant factors of the poor outcomes for adults with ASDYet:

53% desired a romantic relationship

52% wanted more friends including:

• friends to confide in (48%)

• friends to socialize with (59%)

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Significant factors of the poor outcomes for adults with ASDUNMET NEEDS

Caregivers of Adolescents with ASD (n=1367)

Caregivers of Adults with ASD (n=492)

Adults with ASD (n=141)

Mental Health Counseling

25% 31% 20%

Social Skills Training

55% 58% 31%

Speech Therapy 27% 25% 15%

Vocational/Employment Services

45% 74% 52%

Transitional Planning

37% 32% 20%

PAAutism.org/needsassessment

Significant factors of the poor outcomes for adults with ASD

0

10

20

30

40

50

60

70

80

90

Caregivers of Adolescents (35%Asperger's Disorder)

Caregivers of Adults (30%Asperger's Disorder)

PAAutism.org/needsassessment

Tasks of Daily Living Mastered to Independence

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CO‐OCCURRINGCONDITIONS

Caregivers of Adolescents with ASD

Caregivers of Adults with ASD

Adults with ASD

Anxiety 24% 34% 32%

ADHD 40% 31% 40%

Depression 11% 12% 43%

OCD 17% 11% 22%

Bipolar Disorder 6% 6% 18%

Intellectual Disability

24% 26% 15%

Learning Disability 31% 29% 33%

Seizure Disorder 8& 8% 7%

None 11% 20% 6%




Six Functional Domains

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Socialization

Communication

Mental Health

Education/

Vocation

Living Skills

Family Development

ALCM

HomeStructured Community Settings

Unstructured Community Settings

Treatment Settings

ALCM: Environments

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Socialization ConcernsPotential Concerns:

• Peer rejection/bullying

• Loss of friendships

• Manipulation by peers

• Increased awareness of social struggles

• Social isolation

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Socialization

• Ask for description of social behaviors in a variety of settings and contexts

• Assess for maintenance of social relationships

• Assess for social referencing deficits and other more nuanced social behaviors (shifting contingencies)


Communication Concerns• Lack of functional

language abilities to meet new skills/expectations

• Poor pragmatic skills

• Poor prosody

• Delayed speech latency/ slow speech fluency

• Misinterpreting non‐verbal communication

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Communication

• For individuals with significant expressive communication deficits, assess for adequate augmentative and alternative communication (AAC)

• For users of AAC, are all functions of language supported?

• For individuals with verbal expressive communication skills, assess for higher order communication skills such as integration of verbal and non‐verbal skills.


Mental Health Potential Concerns• New onset of co‐

occurring conditions

• Worsening of pre‐existing conditions

• Impact of puberty on irritability/aggression anxiety/mood stability

• Impact of increasing demands in other domains

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Mental Health

• Assess functional impact of mental health concerns

• Consider whether long‐standing behaviors of concern may be reflective of new mental health concerns

• Important to receive information from individuals who are able to self report but be aware of prevalent alexithymia

• Caregiver burnout may lead to underreporting of concerns


Education/Vocation Potential Concerns• Unrealistic employment

or education goals

• Vocational skills not adequately addressed on educational transition plan

• Needed pre‐requisite skills (including those in other domains) not addressed

• Lack of resources

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Education/Vocation

• Assess vocational readiness

• Does family and individual have good understanding of available resources?

• If in school, does transition plan address post‐secondary goals adequately?

• For those planning on post‐secondary education, are appropriate criteria being used to evaluate potential schools and programs?

• Does individual and family know how to engage disability services?


Living Skills Potential Concerns• Skills not being trained

to independence

• Failure to address needed skills to access other goals/aspirations

• Not a priority for the treatment team

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Living Skills• How independent is the individual with self‐help skills?

• How independently can individual access the community?

• How independent is the individual with domestic skills?

• Is individual overly dependent on family for prompts to structure the day and initiate tasks?


Family Development Potential Concerns

• Guardianship

• Financial resources

• Expectations of siblings to participate in care

• Lack of resources for families (e.g. respite)

• Contingency plans

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Family Development• Does family have appropriate contingency plans in place?

• Are future expectations for family members (most especially siblings) communicated?

• How are parents adjusting to letting individual have more autonomy in deciding treatment goals and priorities?

• Legal issues (medical, financial)



Effective Care Coordination

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Formulating the clinical assessment:


Redefining the behavior arc:

Antecedents: risk factors / clinical vulnerabilities / environmental triggers

Behaviors: signs and symptoms / clinical presentation

Consequences: sequelae / clinical outcomes

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Understand the intended target:• Have realistic and clear expectations for the intervention

• Communicate these expectations across the treatment team

• Critical to have behavior data to support (or refute) an intervention’s efficacy

• Should be patient‐centered and family syntonic


Optimize intervention trials:• Agree on a behavioral target which is easily operationalized

in multiple environments

• Agree on data collection method and frequency

• Establish a baseline for current functioning prior to initiation of intervention

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Optimize intervention trials:• Collect data at agreed upon intervals and frequency

• Coordinate new interventions with current treatment plan

• Limit the number of changing variables whenever possible

• Base intervention changes on consistent formulation

• Give interventions appropriate time to demonstrate change (trends can take time to become clear)


Effective treatment planning:

• Establish baseline frequency

• Functional Assessment

• Treatment formulation

• Treatment intervention:

• Behavior extinguished

• Behavior promoted

• Monitoring Plan

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Case Example: AD20year‐old young man with co‐occurring ASD, moderate ID, and anxiety:

• Staff reporting increasing rates of aggression to others during community outings and community based vocational training

• Current medications include low dose aripiprazole and medium dose sertraline


Process• Establish baseline frequency






• Monitoring Plan

Case Example: AD

Establish baseline frequency.

Sampled over 2 weeks and 8 community outings, high level aggression occurred 20 times and low level aggression occurred during 28% of 5 minute intervals.

Behavior of concern identified.

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• Monitoring Plan

Case Example: AD

Functional assessment.

Aggression occurs most often in novel situations and with less familiar staff; behavior thought to be means of communicating distress.

Behavior of concern assessed in multiple environments and conditions.








• Monitoring Plan

Case Example: AD

Treatment Formulation.

Given functional assessment and previous history of anxiety, behaviors thought to be reflective of worsening anxiety and underdeveloped requesting skills.

Functional assessment leads to clinical impression for treatment team with implications for service delivery.

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• Monitoring Plan

Case Example: AD

Treatment intervention.

Increase sertraline from 50 mg to 100 mg daily and practice structured requesting program daily for 4 weeks.

With guidance from treatment providers, individual and family elect intervention from options provided.








• Monitoring Plan

Case Example: AD

Expected behavior changes.

Behavior extinguished: reduction of high level aggression, reduction of low level aggression by 50%

Behavior promoted: increase in appropriate requesting behaviors during outings by 20%.

Behavior targets communicated to individual, family, and treatment team as appropriate.

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• Monitoring Plan

Case Example: AD

Ongoing monitoring.

Repeat data collection procedures 4 weeks after dose increase and requesting program completed

Determine process for data collection (who, when, where, how) after intervention .


0

1

2

3

4

5

1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35 37 39 41

High Aggression

Baseline: 20 Incidents of High Aggression

100 mgs sertraline: 19 Incidents

Case Example: AD

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Case Example: AD

0

5

10

15

20

25

30

35

40

45

50

55

60

65

70

75

80

85

90

95

100

1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35 37 39 41

PercentageofIntervals

Days

Low Level

Requesting

Baseline: 50 mgs sertraline Continue Baseline to Collect Requesting Data

Treatment: 100mgs sertraline and requesting protocol


Coordinating care across multi‐provider care systems

• Streamline communication

• Increase collaborative goal setting

• Use community resources

• Connect with peer or mentor families

• Plan visits with team members

• Train caregivers and healthcare providers

• Establish a written care plan

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Rewards of Care Coordination• Increased access to

services• Increased continuity of

care• Increased family support• Strengths based rather

than deficit based thinking

• Decreased barriers to care

• Decrease in fragmented care

• Decreased family stress



Current Assessment and Planning Methods

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Baseline Measures• Demographics Form• Treatment Network Outline• Life Events Questionnaire• Vineland Adaptive Behavior Scales ($)• Social Responsiveness Scale‐2 (SRS‐2) ($)• Multidimensional Satisfaction with Services (MASS)*• Intolerance of Uncertainty (IUS)*• Multidimensional Assessment Scale for Children‐2 (MASC‐2)($)*• Achenbachs ($):

• Youth Self Report (age 11‐18)• Child Behavior Checklist (age 6‐18)• Adult Self Report (age 18‐59)• Adult Behavior Checklist (age 18‐59)

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Ongoing Assessment

• All measures repeated semi‐annually with exceptions of Vineland

and Achenbachs which are repeated annually

• Master Treatment Plan updated quarterly

• Customized Data Collection

• Reflecting individual’s and family’s treatment priorities• Reviewed at every meeting (for most this is monthly)• Key is for this data collection to be easy to record (reduce reporter

burden) and to meaningfully capture the intended target


Increasing community accessCurrently developing new measures which would be low (free?) charge and automatically scoring leading to:

• Comparability

• Reliability and Validity

• Flexibility

• Inclusiveness

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Case Example: Chance18 year old male with Autism Spectrum Disorder without intellectual disability, without expressive communication deficits, Social/communication impact level 2, Restricted/repetitive behavior impact level 2, with co‐occurring generalized anxiety


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IEP Review:• No speech therapy or communication goals• Social skills development:

• Weekly special lunch group with guidance counselor• Vocational planning:

• Weekly meeting with vocational specialist• No living skills development• Academic accommodations:

• Extra time for tests and assignments• Daily resource room for support and management• Provided copies of lecture notes and study guides• Specialized instruction methods in math and science

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Life Events Checklist• Major change in closeness of family (‐2)

• Major change in usual type and/or amount of recreation (‐3)

• Borrowing more than $10,000 (‐1)

• Son or daughter leaving home (‐2)

• Other: Lost TSS and MT after having service for 9 years. Two rounds of grievance procedures did not get services reinstated

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CH Formulation

Baseline Data:

Functional Assessment:

Treatment Priority:

Treatment Intervention:

Behavior extinguished:

Behavior promoted:

Monitoring Plan:


CH FormulationBaseline Data: Demonstrating significant impairments in the areas of social cognition and social communication in the presence of good social motivation with high levels of restrictive and repetitive behaviors. Adaptively has low interpersonal and leisure skills. Parents view him as being oppositional with high aggressive behaviors; they also see him as withdrawn and depressed. Chance endorses high rates of anxiety, depression, and thought problems. Both chance and his parents view him as having separation issues and as being highly tense and restless. Parents also view him as being highly intolerant of uncertainty. Low receptive and expressive language skills. Low domestic skills with relatively preserved personal self‐help skills. Family is experiencing significant stress related to family transition (daughter leaving for college).

Functional Assessment:

Treatment Priority:

Treatment Intervention:

Behavior extinguished:

Behavior promoted:

Monitoring Plan:

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CH Formulation• Baseline Data:

• Functional Assessment: 17 yo old young man with ASD and anxiety presenting with marked impairments in communication and socialization. Anxiety significantly interfering with his developing new functional skills. Family struggling with finding appropriate support balance. His oppositional and aggressive behaviors at home may be a manifestation of his anxiety symptoms (which appear under‐recognized by his parents).

• Treatment Priority:

• Treatment Intervention:

• Behavior extinguished:

• Behavior promoted:

• Monitoring Plan:



• Functional Assessment:






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ALCM Treatment PlanDiagnosis:

Date:

Family Development

Communication

Strengths Needs Long Term Goal

Short Term Goal

Action Steps/Plan

Socialization

Mental Health

Employment/Education

Daily Living Skills

Update

Initial

Aut

i

68

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ALCM Treatment PlanDiagnosis: Autism Spectrum Disorder (299.00)

Date: 8/19/14

Family Development

Communication


Short Term Goal

Action Steps/Plan

Socialization

Mental Health


Daily Living Skills

• Followed by Dr. Murray• Meets with Dr. Minnick

regarding anxiety• Few challenging behaviors

• Does well in school• Has clear goals for post-

secondary work

• Participated in adolescent social skills group

• Good basic conversation skills

• High motivation to develop friendships

• Good communication skills

• Able to make wants and needs known

• Carry conversation with others

• Good personal care and community skills

• Gaining independence in these areas

• Strong family support, close relationship with sister and grandmother

• Family advocates for needs and accesses necessary services

• Gain insight into his anxiety, develop coping skills

• Learn to compartmentalize some restricted interests

• Become familiar with work environment

• Determine career goals and steps to achieve

• Gain insight into friendships and relationships

• Increase participation in activities and events

• Continue to increase conversation skills

• Increase nonverbal communication skills

• Increase ability to vary communication across environments

• Improve understanding of rules of social lang.

• Improve domestic care skills (cooking, laundry)

• Improve community safety (transportation, finances)

• Increase participation in managing healthcare

• Understand waiver services• Research natural supports

outside family• Become familiar with OVR

• Recognize signs of anxiety and independently implement coping strategies

• Graduate high school• Obtain a job in a book

store

• Develop at least one close friendship outside of a formal setting (i.e., school)

• Advocate for self appropriately in school and work settings

• Communicate feelings of anxiety

• Live independently with minimal supports from family (either with or without a roommate)

• Get on waiting lists for wavier services

• Intake with OVR for job coaching/placement

• Social Security Benefits as an adult

Update

Initial


CH Formulation

•Baseline Data:




•Behavior extinguished:

•Behavior promoted:

•Monitoring Plan:

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Date: 8/19/14

Family Development

Communication


Short Term Goal

Action Steps/Plan

Socialization

Mental Health


Daily Living Skills




secondary work




























store








Update

Initial

Cook meal for self when choosing to eat something different from rest of family

Participate in social activities with peers outside of school

in an unstructured setting

Get a volunteer position at a local libraryGet a part time summer job









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Date: 8/19/14

Family Development

Communication


Short Term Goal

Action Steps/Plan

Socialization

Mental Health


Daily Living Skills




secondary work




























store








Update

Initial

Cook meal for self when choosing to eat something different from rest of family

Participate in social activities with peers outside of school

in an unstructured setting

Get a volunteer position at a local libraryGet a part time summer job

Learn to use the stove top to cook mealsExpand on baking/oven skillsStart preparing easy recipes with assistance from parents

Join a club/group at school (4H, yearbook, etc)Start conversations with peers in school

Participate in work/study through school, help at school libraryGather information on small bookstores for possible part time jobContact local libraries




• Treatment Formulation:





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Treatment Intervention Frequency Goals Addressed Staff

X Autism Life Care Model Monthly Review Social/Employment/Daily Living Skills

Layton

X SchoolWork Study Program(School Library)

Daily (School days) Employment/Voc Richards

X Individual therapy:Conversation skillsJob research

Weekly Socialization Employment/Voc

Minnick

X Cooking Lessons 2x/week Daily Living Skills Mom

X Social Coaching(Peer Dyad)

Monthly Socialization Murray

X Social Exposure(Vintage TV Club)

Weekly Socialization ChancePopovich

Treatment Plan Update Due: 11/19/14

PATIENT’S SIGNATURE(or Designee)

DATE

ALCM Care Manager DATE/TIME

ATTENDING PSYCHIATRIST SIGNATURE DATE/TIME


Case Study for Work Session: SCSC is a 20 year old woman

with Autism Spectrum Disorder without intellectual disability, without expressive communication deficits, Social/communication impact level 2, Restricted/repetitive behavior impact level 2, with co‐occurring ADHD, combined type and depression

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Special thanks to Chance, Sarah, their families…and all of the individuals and families of the ALCM project.


ASERT is funded by the Bureau of Autism Services, PA Department of Human Services

Website: www.PAautism.orgEmail: [email protected]

holistic and person driven care - amazon s3...6/1/2015 3 pa autism census project: top 1o counties...

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